Jordan went to see Dr. Gold about two weeks ago, it was a good appointment. We were in/out in about an hour, which was record timing for us. He is impressed with how well Jordan looks and feels, considering his counts are not in normal range.
They just called me this morning about yesterday's lab results.
Hemoglobin is 12.4 (down slightly from 13.0 on 8/12/14)
Platelets are 84 (up from 54 on 8/12/14)
As you can see his hemoglobin is playing the ying yang game. Went from 12.7 to 13.0 back to 12.4. We did labs yesterday, I am waiting for his nurse to email the results to me. Hoping his hemoglobin hasn't dipped again.
Dr. Gold is concerned though, because we just cannot get his hemoglobin up past 13.0 the past 3 months. I don't know if Jordan's body is still trying to get over the shingles incident we had to endure in June, or what. Typically September-January is when Jordan flares up, and his counts start dipping, and then we are doing the hospitalization crap all over again. I pray that will not be the case this holiday season. But due to the fact his counts are like a rollercoaster ride right now, they are going to look into increasing his CellCept, which has me a little worried, since it does suppress your immune system. Only thing I can do as a parent, obviously, is to keep him as healthy as possible, and keep him away from anyone sick (which is hard to do, since he is in school everyday).
We never did do his allergy testing earlier this year, I had assumed (as I mentioned in another post) that it was just regular allergy testing, but Dr Gold told me it wasn't, that its more along the lines of testing of his immune system to see what is going on. So they are going to see about getting him another appointment for that in Chapel Hill, which means a day of traveling in the near future. Jordan and I will probably make plans to stay the night up there when that happens, so it isn't a whole day of traveling (its almost a 6 hr drive round trip); apparently the testing is an all day thing, which shall prove to be fun, since he doesn't have the best veins and its always a struggle to get bloodwork from him.
Until next time.....prayers and thoughts will be appreciated as we continue this journey.
Thursday, September 4, 2014
Saturday, August 16, 2014
Weekly Update-8/16/14
His labs this week weren't too bad, everything (other than his platelets) are border-lined low.
Platelets-54 (last week it was 43, normal is 150-450)
Hemoglobin-13 (last week it was 12.7, normal is 14-16)
Neutrophils are 68, which is good, means his body is producing the cells it needs to.
His Bilirubin has risen a little bit, not by much, but I am keeping an eye on his skin and eye color for jaundice. Back in December, it shot up within 2 days, and since this is around the time he flares up anyway, being extra cautious.
We see Dr. Gold (for the first time since May) on Monday, will draw labs again too, but I probably wont hear anything about that from them.
Will update after the appointment....
Platelets-54 (last week it was 43, normal is 150-450)
Hemoglobin-13 (last week it was 12.7, normal is 14-16)
Neutrophils are 68, which is good, means his body is producing the cells it needs to.
His Bilirubin has risen a little bit, not by much, but I am keeping an eye on his skin and eye color for jaundice. Back in December, it shot up within 2 days, and since this is around the time he flares up anyway, being extra cautious.
We see Dr. Gold (for the first time since May) on Monday, will draw labs again too, but I probably wont hear anything about that from them.
Will update after the appointment....
Wednesday, August 6, 2014
Slowly Coming out of Remission-8/6/14
Chapel Hill just called me, and Jordan is slowly coming out of remission after 3 months of being in the clear. His counts are slowly dropping again, and the doctor feels we are going back into a flare up. So he is being put back on steroids (we have only been on CellCept the past two months).
His hemoglobin isn't dangerously low, but its been at 14 all summer and its now down to 12.7. Platelets have been holding strong around the 136 mark, and they are now at 43 (last week they were at 39). They also said his WBC is starting to drop (but nothing dangerously low) YET. So the doctor feels its best we put Jordan back on steroids and try to nip this in the bud before we have a repeat of this past December.
We will repeat labs next Tuesday, hopefully the steroids are doing something for him, and then the following week we see Dr. Gold.
Will update next week, please keep your thoughts and prayers for Jordan. <3
His hemoglobin isn't dangerously low, but its been at 14 all summer and its now down to 12.7. Platelets have been holding strong around the 136 mark, and they are now at 43 (last week they were at 39). They also said his WBC is starting to drop (but nothing dangerously low) YET. So the doctor feels its best we put Jordan back on steroids and try to nip this in the bud before we have a repeat of this past December.
We will repeat labs next Tuesday, hopefully the steroids are doing something for him, and then the following week we see Dr. Gold.
Will update next week, please keep your thoughts and prayers for Jordan. <3
Overdue Update-8/6/14
Didnt realize its been so long since I have updated (almost two months). Last time I updated, we were on Day three of being in the hospital with shingles. So let me backtrack and update you all....
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Jordan ended up being in the hospital for a total of nine days, which was mentally exhausting. He missed the last three days of school, and his 8th grade graduation, but luckily his homeroom teacher stopped by the house to drop off his awards that he received. Dr. Gold did not want him discharged until all the blisters had scabbed over and we knew that it was not spreading.
He received treatment everyday for the shingles, we had only one issue with his veins, and that was with the first IV that was placed...vein blew a couple of days later, had to get a vein specialist in to put another line in, once that was done, we were good with the IV.
He did receive one treatment of IVIG the day before he was discharged, because his platelets were a little low (not sure of the number), it wasn't a critical low number, but better safe than sorry is always the hematologist's motto.
Since then, its been pretty much an uneventful summer, haven't seen Dr. Gold since May. With Jordan being in the hospital in June, we missed that appointment, and never got a rescheduled one for July. But we do see him in two weeks, which we are excited about since its been three months.
I am waiting on lab results from Tuesday's lab work. Chapel Hill called me on Friday and said his platelets were very low (39 and they were at 136 on June 2nd). So we redid labs this week to see if it was a fluke or not. Keeping fingers crossed on that, or else Jordan will go back on steroids and end up hospitalized to get IVIG treatment again (ugh).
And well thats pretty much it on Jordan, will update again if anything changes.
Jordan ended up being in the hospital for a total of nine days, which was mentally exhausting. He missed the last three days of school, and his 8th grade graduation, but luckily his homeroom teacher stopped by the house to drop off his awards that he received. Dr. Gold did not want him discharged until all the blisters had scabbed over and we knew that it was not spreading.He received treatment everyday for the shingles, we had only one issue with his veins, and that was with the first IV that was placed...vein blew a couple of days later, had to get a vein specialist in to put another line in, once that was done, we were good with the IV.
He did receive one treatment of IVIG the day before he was discharged, because his platelets were a little low (not sure of the number), it wasn't a critical low number, but better safe than sorry is always the hematologist's motto.
Since then, its been pretty much an uneventful summer, haven't seen Dr. Gold since May. With Jordan being in the hospital in June, we missed that appointment, and never got a rescheduled one for July. But we do see him in two weeks, which we are excited about since its been three months.
I am waiting on lab results from Tuesday's lab work. Chapel Hill called me on Friday and said his platelets were very low (39 and they were at 136 on June 2nd). So we redid labs this week to see if it was a fluke or not. Keeping fingers crossed on that, or else Jordan will go back on steroids and end up hospitalized to get IVIG treatment again (ugh).
And well thats pretty much it on Jordan, will update again if anything changes.
Friday, June 13, 2014
June Update-6/13/14
Well, this isn't how I wanted to start off our summer vacation.
We are on day 2 on being in the hospital. Jordan has shingles, so he is being closely monitored in the hospital as he receives treatment for it. Very painful thing to have, but he is hanging in there like a trooper.
Unfortunately, he is missing his 8th grade graduation today, yet another disappointment for him. But, it is the last day of school, so YAY on that! He is officially a high schooler!
Not sure how long we will be here, Dr. Gold doesnt want him discharged until the shingles have dried up and scabbed over. They are starting that process, but not quite there yet. I'm hoping for a Monday discharge, we will see.
Good news though, all his counts are good, hemoglobin is at its highest number in six months, 14!! So we are super excited about that, finally normal range!
We are on day 2 on being in the hospital. Jordan has shingles, so he is being closely monitored in the hospital as he receives treatment for it. Very painful thing to have, but he is hanging in there like a trooper.
Unfortunately, he is missing his 8th grade graduation today, yet another disappointment for him. But, it is the last day of school, so YAY on that! He is officially a high schooler!
Not sure how long we will be here, Dr. Gold doesnt want him discharged until the shingles have dried up and scabbed over. They are starting that process, but not quite there yet. I'm hoping for a Monday discharge, we will see.
Good news though, all his counts are good, hemoglobin is at its highest number in six months, 14!! So we are super excited about that, finally normal range!
Wednesday, May 21, 2014
Weekly Update-5/21/14
We saw Dr. Gold on Monday, and again approached him with the request to remove the PICC line, he answered me with, "not until we are completely weaned off steroids". So I showed him Jordan's PICC area, the blisters, the redness, the welts, how he is allergic to the adhesive of the dressing. He was a bit apprehensive about it, but finally agreed that if the lab results come back good, we will remove the PICC line Wednesday morning.
Left the appointment with a new appointment scheduled for Wednesday morning to have the PICC removed.
This morning came, and as I was getting ready to head to the clinic for the appointment, with Jordan, I received a phone call from the clinic nurse saying that no order had been put in to remove the PICC line. That she would make some phone calls and see what was going on. So I turned around and dropped a very disappointing boy off at school.
I spent the entire day off and on the phone with Jordan's nurse and the clinic nurse; all three of us were making phone calls to Chapel Hill, nobody answering, and leaving messages. I was stressed out and very pissed off all day.
Finally around 2:30PM, Diana from Chapel Hill, finally calls me. Says his labs looked good, and said that Dr. Gold did not want to remove the PICC until Jordan was done with the steroids; BUT he would leave it up to me on the decision. I told Diana, I wanted it removed because of the problems we are having with it, and she said okay, then made a phone call to Jordan's nurse with instructions.
His nurse, Molly, came after school, and we removed it. Jordan was very nervous and over whelmed about the entire thing, but he did good, and within 20 mins it was out of his arm.
Left the appointment with a new appointment scheduled for Wednesday morning to have the PICC removed.
This morning came, and as I was getting ready to head to the clinic for the appointment, with Jordan, I received a phone call from the clinic nurse saying that no order had been put in to remove the PICC line. That she would make some phone calls and see what was going on. So I turned around and dropped a very disappointing boy off at school.
I spent the entire day off and on the phone with Jordan's nurse and the clinic nurse; all three of us were making phone calls to Chapel Hill, nobody answering, and leaving messages. I was stressed out and very pissed off all day.
Finally around 2:30PM, Diana from Chapel Hill, finally calls me. Says his labs looked good, and said that Dr. Gold did not want to remove the PICC until Jordan was done with the steroids; BUT he would leave it up to me on the decision. I told Diana, I wanted it removed because of the problems we are having with it, and she said okay, then made a phone call to Jordan's nurse with instructions.
His nurse, Molly, came after school, and we removed it. Jordan was very nervous and over whelmed about the entire thing, but he did good, and within 20 mins it was out of his arm.
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| See his poor arm (left arm), all red, covered in welts. |
They also decreased his steroids again from 30mg to 24mg a day; and instead of weekly blood work, we are now going to do bi-weekly blood work. So yet another step into remission. :)
We are suppose to see Dr. Gold next month, on June 16th, but do not have an exact time yet, apparently he is overbooked that day, since its a half day clinic; they said they would try and fit us in, so we will see if that appointment sticks. Until then.
Wednesday, May 14, 2014
Late Update-5/14/14
I haven't updated in about two weeks, so I figured I would throw in a quick update.
Luckily there has not been much to update on with him. He is doing great, looks/feels great. At least once a week his Evans does take a toll on him, with feeling fatigue. But that just comes with having this blood disorder. Last week he came home from school, was asleep by 5PM and slept until I woke him up the next morning. Of course I checked on him a couple of times, but he was just tired, some nights he just doesn't sleep good and eventually it catches up to him.
He had labs done this past Monday, haven't heard from Chapel Hill on those counts yet. But last week his counts were good, I'd like to see his hemoglobin rise more, but at least its stable.
5/5/14 Labs
Hemoglobin: 12.8
Platelets: 188
Neutrophils: 7
He has his next appt with Dr. Gold on Monday, where, once again, I will request to have his PICC removed. Its very frustrating to keep being told no, not right now. I understand the doctor's concerns, we all lost a lot of sleep back in December and January with Jordan, it was very scary to almost lose him. But its been 5 months since he has received any treatment through his PICC, he only gets blood drawn once a week from it. He has lost a lot of muscle tone in that arm, and IMO its ready to come out. He has only 21 school days left, and I want him to enjoy his summer vacation with his friends and not be restricted due to the PICC line. He has already had to say no a few times to swimming at the beach and/or pool with his friends, and I just do not want that type of summer for him, especially when he starts high school in August, and I want him to have as much as a normal freshman year, as he can. He wants to try out for the swim team in high school (whew on that, no contact sports to worry about).
I pray this fall/winter will be a quiet one for him, since that is when he tends to flare up with his blood disorder. I am hoping the CellCept he is on, will help with that. Not sure how long the doctor plans to keep him on it, but for the meantime, it seems to be working, so I am okay with that.
Will update next week, after his appointment.
Luckily there has not been much to update on with him. He is doing great, looks/feels great. At least once a week his Evans does take a toll on him, with feeling fatigue. But that just comes with having this blood disorder. Last week he came home from school, was asleep by 5PM and slept until I woke him up the next morning. Of course I checked on him a couple of times, but he was just tired, some nights he just doesn't sleep good and eventually it catches up to him.
He had labs done this past Monday, haven't heard from Chapel Hill on those counts yet. But last week his counts were good, I'd like to see his hemoglobin rise more, but at least its stable.
5/5/14 Labs
Hemoglobin: 12.8
Platelets: 188
Neutrophils: 7
He has his next appt with Dr. Gold on Monday, where, once again, I will request to have his PICC removed. Its very frustrating to keep being told no, not right now. I understand the doctor's concerns, we all lost a lot of sleep back in December and January with Jordan, it was very scary to almost lose him. But its been 5 months since he has received any treatment through his PICC, he only gets blood drawn once a week from it. He has lost a lot of muscle tone in that arm, and IMO its ready to come out. He has only 21 school days left, and I want him to enjoy his summer vacation with his friends and not be restricted due to the PICC line. He has already had to say no a few times to swimming at the beach and/or pool with his friends, and I just do not want that type of summer for him, especially when he starts high school in August, and I want him to have as much as a normal freshman year, as he can. He wants to try out for the swim team in high school (whew on that, no contact sports to worry about).
I pray this fall/winter will be a quiet one for him, since that is when he tends to flare up with his blood disorder. I am hoping the CellCept he is on, will help with that. Not sure how long the doctor plans to keep him on it, but for the meantime, it seems to be working, so I am okay with that.
Will update next week, after his appointment.
Tuesday, April 29, 2014
Quick Weekly Update-4/29/14
Sorry its been so long since I have updated, not much to really update about, which is great.
Last time I updated, it was about 10 days before we left for vacation. We had a blast, kids really enjoyed themselves, especially Jordan, which was so heartwarming to see. It even snowed on the second day we were there, which was crazy! I think we saw all four seasons that week.
Jordan's counts are still stable, not much change there either, his Hemoglobin has stayed around the 13.2 range, platelets go back and forth from 140-170, still in the normal range. Liver enzymes look good. All in all good counts so far.
We saw Dr. Gold last week, very quick appt, in and out., everything is fine, spleen is still not normal, but its slowly unswelling back to normal size. We have to remember it was severely swollen, all the way down to his waist, so its going to take some time getting back under those ribs. At the present time, its about 6 inches from his ribs, so we have awhile to go. So Jordan is still pretty restricted to what he can do, because we have to be careful of any impact on his left side (and of course him having that PICC in place also).
We go back to see Dr. Gold on May 19th, so I am once again, going to mention removing the PICC line, especially since we have only 33 more days of school left. I dont want Jordan to be too restricted to what he can do, as it stands now, he can't swim in any pools, or go to the beach, because of the PICC. And I dont want him to not have a good summer, especially since the kids want to go to Myrtle Beach for a weekend in July, for their birthdays. So we shall see, again, I am so over it (flushing and dressing changes).
Until the next update.
Last time I updated, it was about 10 days before we left for vacation. We had a blast, kids really enjoyed themselves, especially Jordan, which was so heartwarming to see. It even snowed on the second day we were there, which was crazy! I think we saw all four seasons that week.
Jordan's counts are still stable, not much change there either, his Hemoglobin has stayed around the 13.2 range, platelets go back and forth from 140-170, still in the normal range. Liver enzymes look good. All in all good counts so far.
We saw Dr. Gold last week, very quick appt, in and out., everything is fine, spleen is still not normal, but its slowly unswelling back to normal size. We have to remember it was severely swollen, all the way down to his waist, so its going to take some time getting back under those ribs. At the present time, its about 6 inches from his ribs, so we have awhile to go. So Jordan is still pretty restricted to what he can do, because we have to be careful of any impact on his left side (and of course him having that PICC in place also).
We go back to see Dr. Gold on May 19th, so I am once again, going to mention removing the PICC line, especially since we have only 33 more days of school left. I dont want Jordan to be too restricted to what he can do, as it stands now, he can't swim in any pools, or go to the beach, because of the PICC. And I dont want him to not have a good summer, especially since the kids want to go to Myrtle Beach for a weekend in July, for their birthdays. So we shall see, again, I am so over it (flushing and dressing changes).
Until the next update.
Wednesday, April 2, 2014
Quick Weekly Update-4/2/14
Jordan has been sick this week, he came home early from school on Monday not feeling well. Achy muscles and he said he felt like he had a fever. No temperature the early part of the day, but when his nurse came by that afternoon for labwork, he had a low grade fever of 99.9. By evening it went up to 100. So we started Tylenol every 6 hrs. Kept him home from school yesterday, because his fever spiked up to 102.5.
Chapel Hill called me later on yesterday afternoon, to go over Monday's lab results. His hemoglobin, platelets, and MCV had dipped; not by much, but enough to cause some alarm, because his counts have not dropped since December. Hemoglobin had dipped to 12.8 (down from 13.6 the week before) and platelets had dipped to 161 (down from 191 the week before). I mentioned that he was sick with a fever and achy muscles; so they decided it would be best if I brought him into the ER for some bloodwork and a flu test, to see what was going on. With him being on CellCept, he is prone to more illnesses and sickness, so we have to be overly cautious with him.
They did blood cultures from his PICC to see if there was a PICC line infection, took some blood cultures from his other arm, did a chest XRAY to check for placement of his PICC line, also did a strep and flu test (so not fun). I do not have all the results, as they have to wait to see if anything grows, but right away his strep test came back positive, so that explains the fever; everything else looked good though. So he is now on Amoxicillin three times a day, and home from school, until tomorrow. Luckily we caught it early, because he was not complaining of any throat pain. His hemoglobin had went back up to 13.1 but his platelets had dipped again, down to 141; so we are watching for any petechia. I hope it only dipped because he has strep, keeping fingers crossed that this is not Evans related. Hospital will call me if anything comes back positive (such as the flu), but the doctor nor I anticipate its the flu, its probably just strep.
(Woke him up this morning to do medications, and his temperature was normal, so thats good.)
As for removal of his PICC line, his doctor does not want to remove it at this time. He is afraid that if we remove it, and Jordan needs treatment again in the near future, we will have to resort to something more long term (such as the port), and thats not something we want to do. So we have to change our plans on what we are going to do during our vacation (still going to the same place, but the things we wanted to do up there, now has to change); but we will make due, the whole point of our vacation is to just get away from "real life" for a few days, and enjoy ourselves out of town. We will figure it out. :)
Until next week.....
Tuesday, March 25, 2014
Quick Weekly Update-3/25/14
Just a quick update, nothing to really report on. Counts are still stable, not yet comfortable with the "R" word yet (remission), but getting there.
Hemoglobin is 13.6 (two weeks ago it was 13.3)
Platelets are at 190 (two weeks ago it was 216)
Those are the only numbers I have, Diana said that his counts looked really good.
I YET AGAIN mentioned about having his PICC removed. She asked when we were going on vacation (told her in 19 days), told her we wanted him to be able to enjoy himself, his veins are healed, he will be okay (and I also told her I was sick too death of stressing about the blood backflow in his line). She said its a very reasonable request, Dr. Gold just wanted to make sure his counts are good (great doctor, love him too pieces, but he is way too overprotective); which they have been for the past month. So she said she would email him right now, and get some answers for me. At this point I will drive 2½ hrs to Chapel Hill to get it removed, I don't care. So hopefully I hear something about that in the next day or two, or I am going to have to turn into a bitch, call up there, and raise hell myself. Rather ridiculous if you ask me.
But like I mentioned above, Jordan is doing great, feeling great, back to his old self. Have noticed though with the past few PICC dressing changes, he has lost some muscle tone in his left arm, from lack of usage. So once that is taken out, and he gets clearance, he wants to start lifting weights (he starts high school in the Fall-enough said, LOL).
Until next week...
Hemoglobin is 13.6 (two weeks ago it was 13.3)
Platelets are at 190 (two weeks ago it was 216)
Those are the only numbers I have, Diana said that his counts looked really good.
I YET AGAIN mentioned about having his PICC removed. She asked when we were going on vacation (told her in 19 days), told her we wanted him to be able to enjoy himself, his veins are healed, he will be okay (and I also told her I was sick too death of stressing about the blood backflow in his line). She said its a very reasonable request, Dr. Gold just wanted to make sure his counts are good (great doctor, love him too pieces, but he is way too overprotective); which they have been for the past month. So she said she would email him right now, and get some answers for me. At this point I will drive 2½ hrs to Chapel Hill to get it removed, I don't care. So hopefully I hear something about that in the next day or two, or I am going to have to turn into a bitch, call up there, and raise hell myself. Rather ridiculous if you ask me.
But like I mentioned above, Jordan is doing great, feeling great, back to his old self. Have noticed though with the past few PICC dressing changes, he has lost some muscle tone in his left arm, from lack of usage. So once that is taken out, and he gets clearance, he wants to start lifting weights (he starts high school in the Fall-enough said, LOL).
Until next week...
Friday, March 21, 2014
Quick Weekly Update-3/21/14
Sorry that I am updating this late, they just called me a few mins ago about this past Monday's labs.
Short and sweet conversation, didn't even get his lab results. Phone call was basically to tell me that they wanted to decrease on his steroids again. So instead of 60mg a day, we are down to 48mg a day. So I am assuming all his lab counts were good since we are decreasing steroids again, just don't have an exact figure in front of me to compare from the previous week. She did mention that they are wanting to rapidly decrease him from here on out, long as his counts are good. So I am hoping by the time we go on vacation we will be completely off the steroids, which means he wont have to take the other two with it (I hope, unless he needs to stay on them because of the CellCept). I assume he wants him to remain on CellCept for the meantime, but I will ask about that when I talk to them next week, or if he wants to wean him off that too, or is that something he will be on for awhile (because it seems to be working).
We had his appt with Dr. Gold on Monday, here in town. Everything was good, I mentioned removing the PICC line, and Dr. Gold was a bit weary on that (IMO) but said he would do whatever we wanted to do. I guess the weariness is from still doing weekly blood works; but like Jordan and I both told him, he can take getting poked by the nurse once a week; done it for the past 7 years during flare ups, we can do it again.
So I mentioned again to Diana (Dr. Gold's nurse) when she called me a few mins ago, that we wanted it removed. Told her we go on vacation in three weeks, and he has been having some issues with blood back-flowing into the line (which I mentioned at Monday's appt-and no one seemed concerned about that, which I guess its common? hell I don't know), so I have had to up his Heparin from 2ML to 4ML, and also had to re-position the clamp, to stop it from doing that, so far so good, its been about a week since I have seen any blood in the line. Told her it was just ready to come out, its been in for three months now. She said that he had mentioned SOMETHING about it this week, but the conversation didn't really finish, so she would shoot him an email tonight, and call me on Monday about that. I assume they will make us come up there for that removal, which I am fine with it actually. I will make a day trip with Jordan, up there, just to be done with it all. I just want it out before we go on vacation next month, so he can enjoy himself.
Jordan also had his monthly breathing treatment by the respiratory therapist, and that went fine. Go back next month for that.
Anyway, thats pretty much it with Jordan. He still is looking & feeling great, no more muscle aches; I did keep him home from school on Wednesday, because he said he had a sharp pain in his stomach, but by evening time it was gone. So no telling what that was about.
Until next week.....
Short and sweet conversation, didn't even get his lab results. Phone call was basically to tell me that they wanted to decrease on his steroids again. So instead of 60mg a day, we are down to 48mg a day. So I am assuming all his lab counts were good since we are decreasing steroids again, just don't have an exact figure in front of me to compare from the previous week. She did mention that they are wanting to rapidly decrease him from here on out, long as his counts are good. So I am hoping by the time we go on vacation we will be completely off the steroids, which means he wont have to take the other two with it (I hope, unless he needs to stay on them because of the CellCept). I assume he wants him to remain on CellCept for the meantime, but I will ask about that when I talk to them next week, or if he wants to wean him off that too, or is that something he will be on for awhile (because it seems to be working).
We had his appt with Dr. Gold on Monday, here in town. Everything was good, I mentioned removing the PICC line, and Dr. Gold was a bit weary on that (IMO) but said he would do whatever we wanted to do. I guess the weariness is from still doing weekly blood works; but like Jordan and I both told him, he can take getting poked by the nurse once a week; done it for the past 7 years during flare ups, we can do it again.
So I mentioned again to Diana (Dr. Gold's nurse) when she called me a few mins ago, that we wanted it removed. Told her we go on vacation in three weeks, and he has been having some issues with blood back-flowing into the line (which I mentioned at Monday's appt-and no one seemed concerned about that, which I guess its common? hell I don't know), so I have had to up his Heparin from 2ML to 4ML, and also had to re-position the clamp, to stop it from doing that, so far so good, its been about a week since I have seen any blood in the line. Told her it was just ready to come out, its been in for three months now. She said that he had mentioned SOMETHING about it this week, but the conversation didn't really finish, so she would shoot him an email tonight, and call me on Monday about that. I assume they will make us come up there for that removal, which I am fine with it actually. I will make a day trip with Jordan, up there, just to be done with it all. I just want it out before we go on vacation next month, so he can enjoy himself.
Jordan also had his monthly breathing treatment by the respiratory therapist, and that went fine. Go back next month for that.
Anyway, thats pretty much it with Jordan. He still is looking & feeling great, no more muscle aches; I did keep him home from school on Wednesday, because he said he had a sharp pain in his stomach, but by evening time it was gone. So no telling what that was about.
Until next week.....
Tuesday, March 11, 2014
Quick Weekly Update-3/10/14
Just got his test results in email, everything looks good.
Something new I learned this week about Evans, thanks to the support groups that I am in....
Jordan has been suffering from fatigue the past two weeks and muscle aches, I figured he just wasn't going to sleep when he is suppose to at night (and or not sleeping well), and I took the muscle aches to us weaning him off the steroids (he WAS on a very high dose starting out-120mg a day). Well come to find out fatigue and muscle aches are symptoms of Evans, even when your counts are in normal range. So that has been an adjustment for him (and us). The fatigue is everyday, muscle aches come and go, so its not an everyday thing.
But other than that, he is pushing through it, dealing with it the best way he can at this point. Spirits are high, and he is excited about next week's appointment, because he is going to request to have the PICC removed. I sure hope Dr. Gold gives the okay on that, even if it means we have to come back at the end of the day and do it (we have to do a breathing treatment 2 hrs after our appt with Dr. Gold., and he is also backed up from not doing clinics last month). Not sure how long it takes to remove a PICC, I know the process of it, but apparently its something the nurse can do right there in the room. Keeping fingers and toes crossed! I am truly over it!
Anyway, here are his lab results:
WBC: 4.3 (was 4.8) Still low
RBC: 5.04 (was 4.57) Normal
Hemoglobin: 13.3 (was 12.2) Still low, but he hasn't been this number in months!
Platelets: 216 (was 163) Normal
Neutrophils: 68 (was 73) Normal
Retic Count: 1.0 (was 1.1) Normal
Bilirubin: 0.4 (was 0.3) Normal
Plan of attack is to decrease his steroids again, we were at 66mg a day, and we are now decreasing to 60mg a day. Appointment next week, and will go from there.
Something new I learned this week about Evans, thanks to the support groups that I am in....
Jordan has been suffering from fatigue the past two weeks and muscle aches, I figured he just wasn't going to sleep when he is suppose to at night (and or not sleeping well), and I took the muscle aches to us weaning him off the steroids (he WAS on a very high dose starting out-120mg a day). Well come to find out fatigue and muscle aches are symptoms of Evans, even when your counts are in normal range. So that has been an adjustment for him (and us). The fatigue is everyday, muscle aches come and go, so its not an everyday thing.
But other than that, he is pushing through it, dealing with it the best way he can at this point. Spirits are high, and he is excited about next week's appointment, because he is going to request to have the PICC removed. I sure hope Dr. Gold gives the okay on that, even if it means we have to come back at the end of the day and do it (we have to do a breathing treatment 2 hrs after our appt with Dr. Gold., and he is also backed up from not doing clinics last month). Not sure how long it takes to remove a PICC, I know the process of it, but apparently its something the nurse can do right there in the room. Keeping fingers and toes crossed! I am truly over it!
Anyway, here are his lab results:
WBC: 4.3 (was 4.8) Still low
RBC: 5.04 (was 4.57) Normal
Hemoglobin: 13.3 (was 12.2) Still low, but he hasn't been this number in months!
Platelets: 216 (was 163) Normal
Neutrophils: 68 (was 73) Normal
Retic Count: 1.0 (was 1.1) Normal
Bilirubin: 0.4 (was 0.3) Normal
Plan of attack is to decrease his steroids again, we were at 66mg a day, and we are now decreasing to 60mg a day. Appointment next week, and will go from there.
Monday, March 3, 2014
Quick Weekly Update-3/3/14
Jordan isn't feeling well today, so he is home from school. Came up to me last night, complaining about a headache, and then this morning he said he just felt icky. Its now afternoon time, and he says he is feeling better, a little achy, but no headache, and he hasn't had a fever yet. Giving him Tylenol (no NSAIDS because of his blood disorder) every 5 hours.
**FLASHBACK** to almost exactly 3 months ago, same type of symptoms before he went into the hospital in respiratory failure two days later. So yeah, anxiety level has been pretty high today, didn't get much sleep last night either.
Luckily today is the day his nurse comes to see him, so I let her know he was home today, and she could come earlier than she normally does (she typically comes around 4PM); she was here by 11AM. Blood Pressure was great, no fever, all signs pointing to okay.
Check my email a little while ago, and got his lab results...as I was reading them and comparing to last week's lab results, his hematologist called me with the results and plan of attack for this week.
Everything looks good, and still stabilized. His platelets have dropped a little bit, but they are still in the normal range, I am hoping they dropped because of this cold he has; have to make sure we stay on top of it, because of the CellCept he is on. Luckily his WBC is in normal range (but barely), so his body can fight this sickness off.
FINALLY got an appt for this month (after two weeks of fighting someone to set it up), so that is in two weeks, and we are keeping our fingers and toes crossed that the PICC line will be removed. We go on vacation in 41 days, so we are very excited about both.
No weaning of steroids this week, everything stays the same. Which I am fine with, I dont want to rush too fast with taking him off.
Here are his test results this week:
WBC: 4.8 (was 4.7) Normal
RBC: 4.5 (was 4.7) Normal
Hemoglobin: 12.2 (was 12.7) Still low
Platelets: 163 (was 206) Normal
Neutrophils: 73 (was 68) A little high, probably due to the steroids he is on-no concern, since it goes back and forth each week
Bilirubin: 0.3 (was 0.4) Normal
Until next week...
**FLASHBACK** to almost exactly 3 months ago, same type of symptoms before he went into the hospital in respiratory failure two days later. So yeah, anxiety level has been pretty high today, didn't get much sleep last night either.
Luckily today is the day his nurse comes to see him, so I let her know he was home today, and she could come earlier than she normally does (she typically comes around 4PM); she was here by 11AM. Blood Pressure was great, no fever, all signs pointing to okay.
Check my email a little while ago, and got his lab results...as I was reading them and comparing to last week's lab results, his hematologist called me with the results and plan of attack for this week.
Everything looks good, and still stabilized. His platelets have dropped a little bit, but they are still in the normal range, I am hoping they dropped because of this cold he has; have to make sure we stay on top of it, because of the CellCept he is on. Luckily his WBC is in normal range (but barely), so his body can fight this sickness off.
FINALLY got an appt for this month (after two weeks of fighting someone to set it up), so that is in two weeks, and we are keeping our fingers and toes crossed that the PICC line will be removed. We go on vacation in 41 days, so we are very excited about both.
No weaning of steroids this week, everything stays the same. Which I am fine with, I dont want to rush too fast with taking him off.
Here are his test results this week:
WBC: 4.8 (was 4.7) Normal
RBC: 4.5 (was 4.7) Normal
Hemoglobin: 12.2 (was 12.7) Still low
Platelets: 163 (was 206) Normal
Neutrophils: 73 (was 68) A little high, probably due to the steroids he is on-no concern, since it goes back and forth each week
Bilirubin: 0.3 (was 0.4) Normal
Until next week...
Tuesday, February 25, 2014
Quick Weekly Update-2/25/14
Never did hear from the doctor last week, normally I hear from them on Wednesday's, so if I haven't heard from them by tomorrow evening, I will call Thursday morning and see what is going on with everything.
We need to decrease steroids again, because (thanks to his nurse for sending me the lab report) he is still in stable condition, numbers are still slowly climbing (not as high as I would like, but we will still take it, as long as there is no decrease); he has been on the steroids for over 2 months now, I would like to have him off of them sooner rather than later.
I also need an appointment date for March, since they canceled our appointment this month; we need/want the PICC removed, its just no longer needed. Granted we are still doing blood draws weekly (and I am hoping to move to monthly here shortly), but the whole purpose of the PICC line was because he was having blood drawn every single day (multiple times a day), and his veins couldn't handle it anymore; they have since healed. Plus with us going on vacation mid April to TN, we just don't want to have to deal with it either, I want him to have a great time, in a normal setting, not having to worry about the PICC being in place. So with him being in stable condition, we would like it removed. I am even willing to make a trip to Chapel next week to do it, thats how bad we want to be done with it.
Anyhow, here are this week's counts, compared to last week's counts. No big change, but we are happy with it.
WBC: 4.7 (was 5.3 last week) still in normal range
RBC: 4.7 (was 4.6 last week) still in normal range
Hemoglobin: 12.7 (was 12.5 last week) almost to normal range
Platelets: 206 (was 226 last week) still in normal range
Neutrophils: 68 (was 74 last week) last week was a little high, but this week is in normal range
Retic: 1.2 (was 1.1 last week) still in normal range
Bilirubin: 0.4 (was 0.6 last week) still in normal range
Jordan is doing good, his face has broken out a bit, not sure if its just from being a teenager, or its something he is allergic to. We dont have the allergist appointment until the end of April up in Chapel Hill, so we will see on that. Doesn't seem to be bothering him at all. Otherwise he looks and feels great, ready to get back into his normal routine again. I only pray that his counts stay up for awhile, I know with this blood disorder, he can be fine for a few months and then everything goes back to square one again; so I am hoping for a lengthy period of time for the rest of this year, so he can enjoy his summer, and the start of high school in the fall.
Will update this post once I hear from his doctor about what the next course of action is.
They just called me from Chapel Hill, we are decreasing his steroids to 66mg a day (we were at 78mg); so we are getting there. Told her we needed a refill for CellCept, and I need an appointment date for March, because of the issues with the PICC; so she told me she would talk to Dr. Gold and give me a call later on in the week with the new appointment date. If I haven't heard from anyone by Thursday night, I will call Friday morning to reconfirm that I need an appointment date.
We need to decrease steroids again, because (thanks to his nurse for sending me the lab report) he is still in stable condition, numbers are still slowly climbing (not as high as I would like, but we will still take it, as long as there is no decrease); he has been on the steroids for over 2 months now, I would like to have him off of them sooner rather than later.
I also need an appointment date for March, since they canceled our appointment this month; we need/want the PICC removed, its just no longer needed. Granted we are still doing blood draws weekly (and I am hoping to move to monthly here shortly), but the whole purpose of the PICC line was because he was having blood drawn every single day (multiple times a day), and his veins couldn't handle it anymore; they have since healed. Plus with us going on vacation mid April to TN, we just don't want to have to deal with it either, I want him to have a great time, in a normal setting, not having to worry about the PICC being in place. So with him being in stable condition, we would like it removed. I am even willing to make a trip to Chapel next week to do it, thats how bad we want to be done with it.
Anyhow, here are this week's counts, compared to last week's counts. No big change, but we are happy with it.
WBC: 4.7 (was 5.3 last week) still in normal range
RBC: 4.7 (was 4.6 last week) still in normal range
Hemoglobin: 12.7 (was 12.5 last week) almost to normal range
Platelets: 206 (was 226 last week) still in normal range
Neutrophils: 68 (was 74 last week) last week was a little high, but this week is in normal range
Retic: 1.2 (was 1.1 last week) still in normal range
Bilirubin: 0.4 (was 0.6 last week) still in normal range
Jordan is doing good, his face has broken out a bit, not sure if its just from being a teenager, or its something he is allergic to. We dont have the allergist appointment until the end of April up in Chapel Hill, so we will see on that. Doesn't seem to be bothering him at all. Otherwise he looks and feels great, ready to get back into his normal routine again. I only pray that his counts stay up for awhile, I know with this blood disorder, he can be fine for a few months and then everything goes back to square one again; so I am hoping for a lengthy period of time for the rest of this year, so he can enjoy his summer, and the start of high school in the fall.
Will update this post once I hear from his doctor about what the next course of action is.
They just called me from Chapel Hill, we are decreasing his steroids to 66mg a day (we were at 78mg); so we are getting there. Told her we needed a refill for CellCept, and I need an appointment date for March, because of the issues with the PICC; so she told me she would talk to Dr. Gold and give me a call later on in the week with the new appointment date. If I haven't heard from anyone by Thursday night, I will call Friday morning to reconfirm that I need an appointment date.
Tuesday, February 18, 2014
Quick Weekly Update-2/18/14
I haven't heard from the doctor yet, to see if we are decreasing his steroids this week, but got yesterday's test results from Jordan's nurse in email earlier this morning. Everything still looks good, slow and steady his counts are creeping higher.
WBC-5.3 (was 5.9)
RBC-4.6
Hemoglobin-12.5 (was 12.4)
Platelets-226 (was 209)
Neutrophils-74
Retic-1.1
Bilirubin-0.6
We were suppose to have a doctor appointment with his hematologist yesterday, but they called me on Thursday to cancel. Chapel Hill, Raleigh, and that area got hit with some bad weather last week (as we did, we got an ice storm, they got that plus snow). We were disappointed with the cancellation, because we were hoping to have Jordan's PICC line removed, but we understand, and hopefully that appointment will be rescheduled in a couple of weeks.
We did get his Pentamidine treatment yesterday afternoon (he gets this breathing treatment once a month to prevent pneumonia since his immune system is compromised, plus its because of all the treatment he has received, including medication).
I will update this post once I hear from the doctor on what our course of action is for this week as far as decreasing medication and/or just staying on the same course.
Our nightly routine (med wise, is twice a day).
WBC-5.3 (was 5.9)
RBC-4.6
Hemoglobin-12.5 (was 12.4)
Platelets-226 (was 209)
Neutrophils-74
Retic-1.1
Bilirubin-0.6
We were suppose to have a doctor appointment with his hematologist yesterday, but they called me on Thursday to cancel. Chapel Hill, Raleigh, and that area got hit with some bad weather last week (as we did, we got an ice storm, they got that plus snow). We were disappointed with the cancellation, because we were hoping to have Jordan's PICC line removed, but we understand, and hopefully that appointment will be rescheduled in a couple of weeks.
We did get his Pentamidine treatment yesterday afternoon (he gets this breathing treatment once a month to prevent pneumonia since his immune system is compromised, plus its because of all the treatment he has received, including medication).
I will update this post once I hear from the doctor on what our course of action is for this week as far as decreasing medication and/or just staying on the same course.
Our nightly routine (med wise, is twice a day).
Tuesday, February 11, 2014
Quick Weekly Update-2/11/14
Hemoglobin is 12.4 (was 12)
Platelets: 209 (was 195)
WBC: 5.9 (was 4.2)
So everything else is in normal range for a boy his age; Hemoglobin is not there yet, but another 1-2 higher and we will be good. Decreased his steroids from 85mg to 78mg; so hopefully no bad reactions, I am getting nervous as the steroids get lower because his emotions start going everywhere due to weaning. We had that moment this afternoon during PICC dressing change, but I don't blame the steroids on that, just him wanting to be done with all this crap & being frustrated (imagine tearing off a HUGE band-aid SLOWLY, while you have to keep whatever is in your arm INTACT and it can't move....yeah, its not the most comfortable thing to have done-the dressing change-nor is being the person doing the dressing change), and go back to some sort of normalcy until his next flare up (please lord give us longer than a few months to be in remission before the next flare).
When they called me tonight with the blood count results, I asked if his PICC could be taken out next Monday (when we see Dr. Gold for our checkup); she said she sees no problem with that, she can remove it right in the clinic room, but lets see what Dr. Gold says, said she doesn't think he will have a problem removing it, since Jordan has been in stable condition the past two months. So keep your fingers crossed! This does not mean the blood-work will stop, just means he will have to get poked just like everyone else; but he said he was fine with that, and his veins have healed finally.
Nothing else to really report on...did have a TINY scare last week, when I went to do his flush, there was some light pink blood that had drained down to his clamp line; it did this for two days (not bad, just a tiny bit, but enough to alarm me). I just flushed with some extra Hemp and he was good to go. Bad stomach bug going around here, thankfully Jordan has not gotten it yet, and keeping fingers crossed it stays that way.
Appointment with Dr. Gold is next Monday, Jordan will also get his monthly breathing treatment. Lets hope everything continues to improve and we get that PICC line removed!
Platelets: 209 (was 195)
WBC: 5.9 (was 4.2)
So everything else is in normal range for a boy his age; Hemoglobin is not there yet, but another 1-2 higher and we will be good. Decreased his steroids from 85mg to 78mg; so hopefully no bad reactions, I am getting nervous as the steroids get lower because his emotions start going everywhere due to weaning. We had that moment this afternoon during PICC dressing change, but I don't blame the steroids on that, just him wanting to be done with all this crap & being frustrated (imagine tearing off a HUGE band-aid SLOWLY, while you have to keep whatever is in your arm INTACT and it can't move....yeah, its not the most comfortable thing to have done-the dressing change-nor is being the person doing the dressing change), and go back to some sort of normalcy until his next flare up (please lord give us longer than a few months to be in remission before the next flare).
When they called me tonight with the blood count results, I asked if his PICC could be taken out next Monday (when we see Dr. Gold for our checkup); she said she sees no problem with that, she can remove it right in the clinic room, but lets see what Dr. Gold says, said she doesn't think he will have a problem removing it, since Jordan has been in stable condition the past two months. So keep your fingers crossed! This does not mean the blood-work will stop, just means he will have to get poked just like everyone else; but he said he was fine with that, and his veins have healed finally.
Nothing else to really report on...did have a TINY scare last week, when I went to do his flush, there was some light pink blood that had drained down to his clamp line; it did this for two days (not bad, just a tiny bit, but enough to alarm me). I just flushed with some extra Hemp and he was good to go. Bad stomach bug going around here, thankfully Jordan has not gotten it yet, and keeping fingers crossed it stays that way.
Appointment with Dr. Gold is next Monday, Jordan will also get his monthly breathing treatment. Lets hope everything continues to improve and we get that PICC line removed!
Tuesday, February 4, 2014
Quick Weekly Update-2/4/14
Jordan's doctor called me a couple of hours ago, everything looks great:
Hemoglobin: 12 (up from 11)
Platelets: 195 (same from last week)
WBC: 4.2 (up from 4.1)
So he has OFFICIALLY been placed in stable condition (they wanted at least a month's worth of results, before placing him in this area). We are NOT decreasing his steroids this week, will see how the lab results are next week, and will decrease again. Right now he is on 85mg of Prednisolone a day (along with his other med's, including 750mg of CellCept). In two weeks we see his doctor again, and Jordan is going to request for his PICC line to be removed; he told me last night, his veins have healed, he can stand being poked once a week again, with a needle. So hopefully having that removed will be an easy task, and not something we need to travel to Chapel Hill for.
We let Jordan stay at his best friend's house all weekend, they were our old neighbors (no pun intended LOL) for 8 years; so they have been basically on this journey with us, since they are like a second family to Jordan. Been best friends for 10+ years; he came home for a short moment Saturday night, so I could do his flush, but other than that, took his meds with him and had a ball. He definitely needed to be out of the house, he has been stuck with us for the past 2 months.
Until next week =)
Hemoglobin: 12 (up from 11)
Platelets: 195 (same from last week)
WBC: 4.2 (up from 4.1)
So he has OFFICIALLY been placed in stable condition (they wanted at least a month's worth of results, before placing him in this area). We are NOT decreasing his steroids this week, will see how the lab results are next week, and will decrease again. Right now he is on 85mg of Prednisolone a day (along with his other med's, including 750mg of CellCept). In two weeks we see his doctor again, and Jordan is going to request for his PICC line to be removed; he told me last night, his veins have healed, he can stand being poked once a week again, with a needle. So hopefully having that removed will be an easy task, and not something we need to travel to Chapel Hill for.
We let Jordan stay at his best friend's house all weekend, they were our old neighbors (no pun intended LOL) for 8 years; so they have been basically on this journey with us, since they are like a second family to Jordan. Been best friends for 10+ years; he came home for a short moment Saturday night, so I could do his flush, but other than that, took his meds with him and had a ball. He definitely needed to be out of the house, he has been stuck with us for the past 2 months.
Until next week =)
Wednesday, January 29, 2014
1/29/14 Weekly Update
Sorry I didn't update yesterday when I got the lab results in, things have been crazy the past 24 hrs. We had a winter storm move through that put several inches of ice on the ground; which has shut our town down completely (we live in southeastern NC); kids have not been in school since Monday, and unsure if they will go back Friday or Monday.
Things are looking stable, that's the best word I can use right now. Counts are not going up, and they aren't really going down either (his platelets are going back and forth, but still in the normal range). We have decreased his steroids again, but this time the doctor only decreased it by 5mg (instead of the 10mg as we have been doing the past two weeks); so we are at 85mg right now on that (13 ml in the morning and 15 ml in the evening), other meds are still the same, no mention of taking him off CellCept, I have about 6 more weeks left in my fridge on that, and I guess I will ask at the next appointment about either a refill or are we weaning him off that.
The Allergy and Immunology Clinic in Chapel Hill called me in the latter part of the week, last week and scheduled him an appointment to start allergy testing, which is good news; bad news is, its not until the end of April. Since he had no viruses or infections going on when he was admitted into the hospital throughout the month of December, they just want to make sure its not allergy related causing these flare ups of his counts to rapidly decrease out of the blue. We did mention that we got our first REAL Christmas tree, 4 days before he went into the hospital. They were "hmm" about it, but said its probably a coincidence, but they will test for that just incase. They said to expect to be there for hours for testing, and our appointment isn't even until 12:30PM, going to be a long day. Luckily our family vacation is the week before, so we should feel refreshed and ready to tackle this next hurdle together.
Here are this week's counts:
Hemoglobin: 11 (down from 11.4)
Platelets: 195 (down from 229)
WBC: 4.1 (no change)
Retic: 1.9 (up from 1.2)
His Complete Neutrophil count is also good.
Jordan is doing good, face has broken out a little bit, since we are now weaning him off the steroids (but his face is like that when not on steroids, thanks to teenage hormones). Still has the PICC line in, and I have become a pro on changing the dressing every week, and doing the flushes everyday. But I cannot wait to not have to play nurse anymore, its mentally exhausting. He is definitely a trooper in all of us, but I know he is ready to get back to his normal life. Even with being absent all of December, from school, still got A's/B's on his report card; very proud of him.
Next blood draw is next Monday, continued thoughts and prayers.
Things are looking stable, that's the best word I can use right now. Counts are not going up, and they aren't really going down either (his platelets are going back and forth, but still in the normal range). We have decreased his steroids again, but this time the doctor only decreased it by 5mg (instead of the 10mg as we have been doing the past two weeks); so we are at 85mg right now on that (13 ml in the morning and 15 ml in the evening), other meds are still the same, no mention of taking him off CellCept, I have about 6 more weeks left in my fridge on that, and I guess I will ask at the next appointment about either a refill or are we weaning him off that.
The Allergy and Immunology Clinic in Chapel Hill called me in the latter part of the week, last week and scheduled him an appointment to start allergy testing, which is good news; bad news is, its not until the end of April. Since he had no viruses or infections going on when he was admitted into the hospital throughout the month of December, they just want to make sure its not allergy related causing these flare ups of his counts to rapidly decrease out of the blue. We did mention that we got our first REAL Christmas tree, 4 days before he went into the hospital. They were "hmm" about it, but said its probably a coincidence, but they will test for that just incase. They said to expect to be there for hours for testing, and our appointment isn't even until 12:30PM, going to be a long day. Luckily our family vacation is the week before, so we should feel refreshed and ready to tackle this next hurdle together.
Here are this week's counts:
Hemoglobin: 11 (down from 11.4)
Platelets: 195 (down from 229)
WBC: 4.1 (no change)
Retic: 1.9 (up from 1.2)
His Complete Neutrophil count is also good.
Jordan is doing good, face has broken out a little bit, since we are now weaning him off the steroids (but his face is like that when not on steroids, thanks to teenage hormones). Still has the PICC line in, and I have become a pro on changing the dressing every week, and doing the flushes everyday. But I cannot wait to not have to play nurse anymore, its mentally exhausting. He is definitely a trooper in all of us, but I know he is ready to get back to his normal life. Even with being absent all of December, from school, still got A's/B's on his report card; very proud of him.
Next blood draw is next Monday, continued thoughts and prayers.
Tuesday, January 21, 2014
1/21/14 Weekly Update
Doctor just called me with yesterday's results, everything has increased, which is awesome! Moving in the right direction.
Compared to last week's labwork:
Hemoglobin: 11.4 (was a 10)-Not in the normal range yet, but getting there
Platelets: 229 (was 210)-Normal range
WBC: 4.1 (was 3.1)-Almost in the normal range, but not quite there yet
Bilirubin: 0.8 (was 1.2)-He is officially in normal range
We are decreasing his steroids again, from 100mg a day, to 90mg a day. So thats a big jump, because we were only decreasing by 5mg a week, but this week we are decreasing by 10mg. So hopefully his counts stay stabilized, and we still get good lab work results next week.
Nurse will come draw labs on Monday, next week. We are not scheduled to see the doctor until February 17th, as long as bloodwork stays good each week.
Jordan, himself, is doing very good. Back to his normal teenage self. Looks and feels great. He cannot wait to get rid of that PICC line, so I am hoping when we see the doctor on the 17th of next month, we can talk about removing it.
I will update again next week.
Compared to last week's labwork:
Hemoglobin: 11.4 (was a 10)-Not in the normal range yet, but getting there
Platelets: 229 (was 210)-Normal range
WBC: 4.1 (was 3.1)-Almost in the normal range, but not quite there yet
Bilirubin: 0.8 (was 1.2)-He is officially in normal range
We are decreasing his steroids again, from 100mg a day, to 90mg a day. So thats a big jump, because we were only decreasing by 5mg a week, but this week we are decreasing by 10mg. So hopefully his counts stay stabilized, and we still get good lab work results next week.
Nurse will come draw labs on Monday, next week. We are not scheduled to see the doctor until February 17th, as long as bloodwork stays good each week.
Jordan, himself, is doing very good. Back to his normal teenage self. Looks and feels great. He cannot wait to get rid of that PICC line, so I am hoping when we see the doctor on the 17th of next month, we can talk about removing it.
I will update again next week.
Wednesday, January 15, 2014
Quick Update-1/15/14
Doctor just called me from Chapel Hill about Monday's lab work results; everything looks great, and looks to be that his counts have finally stabilized.
Hemoglobin is at 10
Platelets are at 210
WBC is at 3.1
So although the numbers are not in the normal range for a kid his age (minus the platelets), he is holding steady and he is remaining out of the danger zone (still have to be careful around viruses and sicknesses going around, since his WBC is still low). We are going to decrease his steroids a little more (right now he is at 60mg in the morning and 50mg at night); now we are going to do 50mg twice a day, starting tomorrow. Weaning him has to be a slow process, 1)so he doesn't have any reactions 2)got to make sure his counts will continue to be stable as we decrease the steroids slowly. I asked about his CellCept, and they want to keep him on it as we have been (which is 760mg a day).
Also we are now down to once a week labs (we started off 3 times a week, then twice a week); so I am happy about that. He was suppose to get lab work done tomorrow, but they are canceling that, and we will get lab work done on Monday before he goes in to get his inhalation.
Hemoglobin is at 10
Platelets are at 210
WBC is at 3.1
So although the numbers are not in the normal range for a kid his age (minus the platelets), he is holding steady and he is remaining out of the danger zone (still have to be careful around viruses and sicknesses going around, since his WBC is still low). We are going to decrease his steroids a little more (right now he is at 60mg in the morning and 50mg at night); now we are going to do 50mg twice a day, starting tomorrow. Weaning him has to be a slow process, 1)so he doesn't have any reactions 2)got to make sure his counts will continue to be stable as we decrease the steroids slowly. I asked about his CellCept, and they want to keep him on it as we have been (which is 760mg a day).
Also we are now down to once a week labs (we started off 3 times a week, then twice a week); so I am happy about that. He was suppose to get lab work done tomorrow, but they are canceling that, and we will get lab work done on Monday before he goes in to get his inhalation.
Monday, January 13, 2014
Monday Update-1/13/14
Jordan had his weekly appointment with Dr. Gold this morning. Everything went well, he is very pleased with how Jordan is looking and feeling. Said he has had a lot of sleepless nights because of him (join the club buddy-LOL).
Lymph nodes are good, not swollen anymore; spleen is still swollen, but its slowly going back to normal (again, they told us last month that it could take months before its back down to regular size).
They did some blood work to check his counts, but also to check his liver enzymes, etc. I do not have those results, I'm going with the assumption that no news is good news. I am anticipating a phone call tomorrow or so, just because Dr. Gold said if the blood work looks good, we will decrease his Prednisolone some more (right now we are at 60mg in the morning and 50mg in the evening-along with 760mg of CellCept a day, and the other med's he has to take because of being on Prednisolone). He also said if the blood work looks good, we will go down to once a week labs (right now we are at twice a week). So we will see how that goes. We are also at monthly appointments with Dr. Gold., instead of the weekly visits. Which means we can now see Dr. Gold here in town, when he comes down for clinic work at the hospital, instead of traveling all the way to Chapel to see him. Long as Jordan's counts stay good, they start dropping, then back to Chapel we go. I assume we will be back up there eventually, because Jordan still has a PICC line in., and at some point, that will have to be removed; but with the blood work needing to be done 1-2 a week still, it will remain in for now.
Speaking of PICC line, I got to experience changing the PICC line dressing today. Scary experience! They didn't do it at the clinic, and truthfully I wasn't comfortable having it done there anyway (its not like the clinic in Chapel-almost like a regular pediatric office). I had to take a crash course on changing it when Jordan got it placed in on December 18th (two hour crash course mind you); but that was on a dummy doll. The removal of the dressing is not bad, its cleaning and making sure the actual PICC itself doesn't move; that, and everything HAS to be sterile (its a must)! I don't think I did too bad, Jordan said I did good (LOL); I'll have Amber (his nurse) check it out tomorrow when she comes to see him; I think she will be pleased.
We just locked ourselves up in my bedroom, I got him comfortable laying down on my bed, with his arm propped up on a couple of pillows, and we took our time with everything; took me about 30 min's from start to finish. Now that I have done it for the first time and got that out of the way, I am pretty comfortable doing it now.
Next week (Monday), we do have an appointment, in the afternoon, for Jordan to receive his Pentam inhalation solution (300 mg into his lungs) with the respiratory therapist (here at our local hospital-should be in and out within an hour). He had this done in Chapel, the day after Christmas for the first time. Since his immune system is suppressed right now, his risk of developing pneumonia is higher; so we have to do this once a month (order is in for 12 months-so we will see if this is a monthly thing until December), to keep his lungs clear of any fluid, etc. I'm fine with that. Luckily he wont have to miss any school, since its a Holiday; next appointment after that is February 17th with Dr. Gold (here in town); of course as long as his counts stay stable.
Will keep everyone updated as new news pops up; continued thoughts & prayers of course! ;)
Lymph nodes are good, not swollen anymore; spleen is still swollen, but its slowly going back to normal (again, they told us last month that it could take months before its back down to regular size).
They did some blood work to check his counts, but also to check his liver enzymes, etc. I do not have those results, I'm going with the assumption that no news is good news. I am anticipating a phone call tomorrow or so, just because Dr. Gold said if the blood work looks good, we will decrease his Prednisolone some more (right now we are at 60mg in the morning and 50mg in the evening-along with 760mg of CellCept a day, and the other med's he has to take because of being on Prednisolone). He also said if the blood work looks good, we will go down to once a week labs (right now we are at twice a week). So we will see how that goes. We are also at monthly appointments with Dr. Gold., instead of the weekly visits. Which means we can now see Dr. Gold here in town, when he comes down for clinic work at the hospital, instead of traveling all the way to Chapel to see him. Long as Jordan's counts stay good, they start dropping, then back to Chapel we go. I assume we will be back up there eventually, because Jordan still has a PICC line in., and at some point, that will have to be removed; but with the blood work needing to be done 1-2 a week still, it will remain in for now.
Speaking of PICC line, I got to experience changing the PICC line dressing today. Scary experience! They didn't do it at the clinic, and truthfully I wasn't comfortable having it done there anyway (its not like the clinic in Chapel-almost like a regular pediatric office). I had to take a crash course on changing it when Jordan got it placed in on December 18th (two hour crash course mind you); but that was on a dummy doll. The removal of the dressing is not bad, its cleaning and making sure the actual PICC itself doesn't move; that, and everything HAS to be sterile (its a must)! I don't think I did too bad, Jordan said I did good (LOL); I'll have Amber (his nurse) check it out tomorrow when she comes to see him; I think she will be pleased.
We just locked ourselves up in my bedroom, I got him comfortable laying down on my bed, with his arm propped up on a couple of pillows, and we took our time with everything; took me about 30 min's from start to finish. Now that I have done it for the first time and got that out of the way, I am pretty comfortable doing it now.
Next week (Monday), we do have an appointment, in the afternoon, for Jordan to receive his Pentam inhalation solution (300 mg into his lungs) with the respiratory therapist (here at our local hospital-should be in and out within an hour). He had this done in Chapel, the day after Christmas for the first time. Since his immune system is suppressed right now, his risk of developing pneumonia is higher; so we have to do this once a month (order is in for 12 months-so we will see if this is a monthly thing until December), to keep his lungs clear of any fluid, etc. I'm fine with that. Luckily he wont have to miss any school, since its a Holiday; next appointment after that is February 17th with Dr. Gold (here in town); of course as long as his counts stay stable.
Will keep everyone updated as new news pops up; continued thoughts & prayers of course! ;)
Saturday, January 11, 2014
Saturday Update-1/11/14
Dr Gold was concerned about the ulcers in Jordan's mouth, so he wanted us to go do a throat culture to make sure it wasn't anything other than ulcers. While at the doctor's, we went ahead and did some blood work.
Everything looks good blood work wise, and everything is up compared with the Monday and Thursday blood work.
WBC is 3.1 (4.5-13 is normal) so that is up from the 2.9 from Monday.
RBC is 3.5 (4.5-5.3 is normal), so that is slightly down from the 3.7 from Monday.
HGB is 10 (13-16 is normal), so that is up from the 9.6 from Thursday.
Platelets are 210 (150-450 is normal), and that is down from the 211 from Thursday.
Bilirubin level is 1.2 (0.2-1.0 is normal) so that is still slowly dropping (which is good).
Retic count is 1.2 (0.5-1.8 is normal) and that is WAY DOWN from the 8.5 from earlier this month; so very pleased with that.
Neutrophils are 67, which is still in a normal range.
WBC and HGB are still going back and forth from high to a little low; so his levels are still not stabilized yet; but at least they are staying out of the danger zone for now.
No results on the throat culture yet, hopefully know in a day or two. Appointment with Dr. Gold Monday morning. Did get a script for the "Magic Mouthwash" so that gives him some relief from the ulcers deep down his throat.
Will update again on Monday; continued thoughts and prayers please =)
Everything looks good blood work wise, and everything is up compared with the Monday and Thursday blood work.
WBC is 3.1 (4.5-13 is normal) so that is up from the 2.9 from Monday.
RBC is 3.5 (4.5-5.3 is normal), so that is slightly down from the 3.7 from Monday.
HGB is 10 (13-16 is normal), so that is up from the 9.6 from Thursday.
Platelets are 210 (150-450 is normal), and that is down from the 211 from Thursday.
Bilirubin level is 1.2 (0.2-1.0 is normal) so that is still slowly dropping (which is good).
Retic count is 1.2 (0.5-1.8 is normal) and that is WAY DOWN from the 8.5 from earlier this month; so very pleased with that.
Neutrophils are 67, which is still in a normal range.
WBC and HGB are still going back and forth from high to a little low; so his levels are still not stabilized yet; but at least they are staying out of the danger zone for now.
No results on the throat culture yet, hopefully know in a day or two. Appointment with Dr. Gold Monday morning. Did get a script for the "Magic Mouthwash" so that gives him some relief from the ulcers deep down his throat.
Will update again on Monday; continued thoughts and prayers please =)
Friday, January 10, 2014
Thursday Update-1/10/14
I don't have all the numbers in front of me, Chapel Hill called me while I was driving, so I couldn't write everything down. His nurse hasn't received the lab work email yet, so she hasn't been able to send it to me just yet (I will update this when I get that email).
His counts have dropped a little bit...this is what I could remember from all the numbers she was throwing out at me.
WBC 2.9 (2.9 on Monday)-I think she said this number, again, not quite sure until I see the lab work myself.
Hemoglobin: 9.6 (11.6 on Monday)
Platelets-211 (359 on Monday)
They aren't concerned about the drop in numbers, because they have lowered his steroids a little bit, and he is still on a strong dosage of CellCept. Basically his body needs to learn to do everything on its own again, instead of relying on these med's; its going to take some time. We have an appointment Monday morning, here in town (Dr. Gold and his team are coming down here for their monthly clinic work); so that gives us a little break from driving; so hopefully Monday will give us a higher number count (continued prayers and thoughts are appreciated).
We also have an appointment on the 21st in Chapel Hill, he is due for his monthly breathing treatment (I am unsure of the name of this treatment and not quite exactly sure what the treatment is for). He received it when he was admitted into Chapel (Christmas week) for the first time, and Brian was with him then. So I'll have to ask about it at Monday's appointment.
Right now he is suffering from the beginning stages of thrush (has a few ulcers under his top lip and in the back of his throat). We ran out of his Fluconazole (another name for Diflucan) on Monday, had the doctor call in another script for him through CVS; and it was on backorder. So I have been fighting them all week on filling the script; FINALLY was able to get it filled this afternoon; so hopefully in a day or two his mouth will feel better.
Next update will be Monday afternoon; until then prayers and thoughts please.
His counts have dropped a little bit...this is what I could remember from all the numbers she was throwing out at me.
WBC 2.9 (2.9 on Monday)-I think she said this number, again, not quite sure until I see the lab work myself.
Hemoglobin: 9.6 (11.6 on Monday)
Platelets-211 (359 on Monday)
They aren't concerned about the drop in numbers, because they have lowered his steroids a little bit, and he is still on a strong dosage of CellCept. Basically his body needs to learn to do everything on its own again, instead of relying on these med's; its going to take some time. We have an appointment Monday morning, here in town (Dr. Gold and his team are coming down here for their monthly clinic work); so that gives us a little break from driving; so hopefully Monday will give us a higher number count (continued prayers and thoughts are appreciated).
We also have an appointment on the 21st in Chapel Hill, he is due for his monthly breathing treatment (I am unsure of the name of this treatment and not quite exactly sure what the treatment is for). He received it when he was admitted into Chapel (Christmas week) for the first time, and Brian was with him then. So I'll have to ask about it at Monday's appointment.
Right now he is suffering from the beginning stages of thrush (has a few ulcers under his top lip and in the back of his throat). We ran out of his Fluconazole (another name for Diflucan) on Monday, had the doctor call in another script for him through CVS; and it was on backorder. So I have been fighting them all week on filling the script; FINALLY was able to get it filled this afternoon; so hopefully in a day or two his mouth will feel better.
Next update will be Monday afternoon; until then prayers and thoughts please.
Monday, January 6, 2014
Monday Update-1/6/14
Saturday's Lab-Work showed his counts back on the rise, which was great news!
This is compared to Thursday's Lab Results:
WBC: 2.7 (was 2.4)-Normal is 4.5-13.0
Hemoglobin: 10.4 (was 9.4)-Normal is 13.7-17.5
Hematocrit: 31.1 (was 27.8)-Normal is 40.0-51.0
Platelets: 403 (371)-Normal is 150-450
Neutrophils: 62 (was 55)-Normal is 47-67
Today we headed up to Chapel Hill for a follow up appointment after a week's worth of blood work here at home, and since its been 10 days since he was discharged from the hospital. Did blood work again, and once again his counts continue to rise...
This is compared to Saturday's lab results:
WBC: 2.9 (was 2.7)-Normal is 4.5-13.0
Hemoglobin: 11.6 (was 10.4)-Normal is 13.7-17.5
Hematocrit: 32.4 (was 31.1)-Normal is 40.0-51.0
Platelets: 359 (403)-Normal is 150-450 (They dropped a little, but no concern, because that's high for Jordan)
***Did not get a Neutrophil count this time, not sure why. But his retic count was 8.5 on Saturday, and Dr. Gold said that's perfect because that means his body is producing the cells it needs to.***
Jordan got his last dose of Vincristine (YAY), and Dr. Gold also wants to start weaning him off the Prednisolone; which is going to be a long process. Right now Jordan is on 60mg twice a day, the new dosage is 60mg in the morning and 50mg in the evening. Each week we will decrease by 10mg, as long as his counts are handling it okay. He is still on all the other prescriptions, including CellCept.
Jordan starts back to school tomorrow (everyone went back today, from Christmas break), after being out the entire month of December; but with restrictions and limitations. No PE participation (due to his PICC line) and of course not picking up anything more than 10lbs with his left arm/hand (where the PICC line is located). I am hoping we can have that PICC line removed by the end of the month; we will see what his counts continue to do. I am super nervous about sending him back; kids can be jerks sometimes, and I am just worried someone will hit the PICC line area, not realizing its a serious area. Thankfully the incision is in the inner arm area, so hopefully he will be okay. I will be picking him up from school, in the afternoons for awhile; until his WBC is in the normal range.
No traveling to Chapel Hill next week, they are coming to our local hospital for clinical work, so we get to see them here in town (which is a nice break). Blood work twice a week (Mondays and Thursdays) from our nurse, and continued PICC dressing changes on Mondays (he also had that changed today too).
Next update later on in the week, after I get Thursday's blood work results. Those that are dealing with the feet of snow and the arctic blast, stay safe and warm! <3
This is compared to Thursday's Lab Results:
WBC: 2.7 (was 2.4)-Normal is 4.5-13.0
Hemoglobin: 10.4 (was 9.4)-Normal is 13.7-17.5
Hematocrit: 31.1 (was 27.8)-Normal is 40.0-51.0
Platelets: 403 (371)-Normal is 150-450
Neutrophils: 62 (was 55)-Normal is 47-67
Today we headed up to Chapel Hill for a follow up appointment after a week's worth of blood work here at home, and since its been 10 days since he was discharged from the hospital. Did blood work again, and once again his counts continue to rise...
This is compared to Saturday's lab results:
WBC: 2.9 (was 2.7)-Normal is 4.5-13.0
Hemoglobin: 11.6 (was 10.4)-Normal is 13.7-17.5
Hematocrit: 32.4 (was 31.1)-Normal is 40.0-51.0
Platelets: 359 (403)-Normal is 150-450 (They dropped a little, but no concern, because that's high for Jordan)
***Did not get a Neutrophil count this time, not sure why. But his retic count was 8.5 on Saturday, and Dr. Gold said that's perfect because that means his body is producing the cells it needs to.***
Jordan got his last dose of Vincristine (YAY), and Dr. Gold also wants to start weaning him off the Prednisolone; which is going to be a long process. Right now Jordan is on 60mg twice a day, the new dosage is 60mg in the morning and 50mg in the evening. Each week we will decrease by 10mg, as long as his counts are handling it okay. He is still on all the other prescriptions, including CellCept.
Jordan starts back to school tomorrow (everyone went back today, from Christmas break), after being out the entire month of December; but with restrictions and limitations. No PE participation (due to his PICC line) and of course not picking up anything more than 10lbs with his left arm/hand (where the PICC line is located). I am hoping we can have that PICC line removed by the end of the month; we will see what his counts continue to do. I am super nervous about sending him back; kids can be jerks sometimes, and I am just worried someone will hit the PICC line area, not realizing its a serious area. Thankfully the incision is in the inner arm area, so hopefully he will be okay. I will be picking him up from school, in the afternoons for awhile; until his WBC is in the normal range.
No traveling to Chapel Hill next week, they are coming to our local hospital for clinical work, so we get to see them here in town (which is a nice break). Blood work twice a week (Mondays and Thursdays) from our nurse, and continued PICC dressing changes on Mondays (he also had that changed today too).
Next update later on in the week, after I get Thursday's blood work results. Those that are dealing with the feet of snow and the arctic blast, stay safe and warm! <3
Thursday, January 2, 2014
Thursday Bloodwork Update-1/2/14
Just got today's lab results, and he is starting to drop again in numbers. Not by much, but still...
This is compared to Monday's lab results
WBC: 2.4 (was 2.8)-Normal is 4.5-13.0
Hemoglobin: 9.4 (was 10.5)-Normal is 13.7-17.5
Hematocrit: 27.8 (was 30.7)-Normal is 40.0-51.0
Platelets: 371 (was 192)-Normal is 150-450 (only thing rising)
Neutrophils: 55 (was 62)-Normal is 47-67
So not a good lab day for us; we go back to Chapel on Monday to receive his Vincristine, PICC dressing change, and see what his counts are then, it was an appointment that was going to happen whether his counts were good or not. I pray they are up and not even more down. Going to pack for the both of us Sunday night, just incase we end up having to stay, but I am hoping not. He has been doing so well the past week, I was hoping for good results as we have been getting with the other two lab results.
Going to be a long four days, being on pins and needles watching him. Please please send good blood work results our way for Monday. He wants to go back to school so bad, and was hoping he would be able to go back on Monday with the rest of his peers. So lets hope he can go back on Tuesday.
This is compared to Monday's lab results
WBC: 2.4 (was 2.8)-Normal is 4.5-13.0
Hemoglobin: 9.4 (was 10.5)-Normal is 13.7-17.5
Hematocrit: 27.8 (was 30.7)-Normal is 40.0-51.0
Platelets: 371 (was 192)-Normal is 150-450 (only thing rising)
Neutrophils: 55 (was 62)-Normal is 47-67
So not a good lab day for us; we go back to Chapel on Monday to receive his Vincristine, PICC dressing change, and see what his counts are then, it was an appointment that was going to happen whether his counts were good or not. I pray they are up and not even more down. Going to pack for the both of us Sunday night, just incase we end up having to stay, but I am hoping not. He has been doing so well the past week, I was hoping for good results as we have been getting with the other two lab results.
Going to be a long four days, being on pins and needles watching him. Please please send good blood work results our way for Monday. He wants to go back to school so bad, and was hoping he would be able to go back on Monday with the rest of his peers. So lets hope he can go back on Tuesday.
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